Supporting our Community
Pure Product Australia is proud to support The Juvenile Arthritis Foundation Australia .
The Juvenile Arthritis Foundation Australia (JAFA) is the primary organisation representing children with juvenile arthritis and their families in Australia. It was named Emerging Not-for-Profit (NFP) of the Year in the 2021 Third Sector Awards.
JAFA is a fully registered national charity with DRG1 status. It was founded in 2019 in response to the urgent need for a national voice dedicated exclusively to representing and addressing the needs of children and adolescents with arthritis and related rheumatic diseases (referred to collectively by JAFA as juvenile arthritis) and their families and carers.
JAFA’s primary aims are to:
Raise awareness of juvenile arthritis among politicians and government, the education sector, the broader community and potential funders.
Lobby governments to provide optimal and accessible health care and support for children and adolescents with juvenile arthritis.
Influence and partner with funders to invest in research into the causes, treatment, care and possible cure for juvenile arthritis.
Diagnosing juvenile arthritis can take 10 months or more
Due to low awareness among health professionals, it takes an average of 10 months from the start of symptoms (like painful joints or difficulty walking, crawling, kneeling, writing, chewing, lifting or holding things) for a child with juvenile arthritis to get diagnosed. That’s a long time to be in pain and a long time for parents to be anxious and stressed about what’s wrong and how they can get help. For some children, diagnosis can take up to two years or more with parents often told ‘it’s just growing pains’ or ‘kids don’t get arthritis’.
Between the start of symptoms and being diagnosed, children are often referred to multiple specialists and go through painful and expensive diagnostic tests, including some which require a general anaesthetic. Sadly, it is not uncommon for some children to already have permanent joint damage or loss of vision by the time they are diagnosed. JAFA is working hard to raise awareness and stop this happening.
Some children with arthritis need regular joint injections
Ongoing, untreated inflammation of the joints is not only painful, it causes permanent damage and disability.
Consequently, many children with juvenile arthritis need joint injections of corticosteroids to reduce the inflammation and associated pain in their joints. This is mostly done under general anaesthetic in hospital as a ‘day patient’. It is in addition to the child’s immunosuppressant and/or other medications and treatments.
Some children need to have repeated joint injections. Not only can this be stressful, it also requires time off school for the child and time
off work for busy parents.
Some arthritis medications can cause sun sensitivity
Children with juvenile arthritis may need extra sun protection when playing outside. This includes more frequent applications of sunscreen, a hat at all times and sunglasses.
Certain medications used to treat juvenile arthritis can cause sun sensitivity including severe sunburn, and sometimes rashes, with even mild exposure.
Ask your child’s rheumatologist or rheumatology nurse about this.
Some children with arthritis need injections and infusions
Many children with arthritis have to take their medications by injection. The injections can be quite painful – not just the needle going in but the drugs themselves can hurt a lot. Not surprisingly many kids develop needle phobias. This is very hard on them and their families, especially the parent or carer who has to give the injections.
Others have to go to hospital every couple of weeks to take their medications by intravenous infusion. This is very time consuming for them and their parents. It means yet another day off school for the child and yet another day off work for a parent. The medications can also make the child feel sick for the next day or so.
Some kids have to do BOTH injections and infusions.